A kidney transplant is an important treatment for children with established renal failure (ERF) – when the kidneys are in failure and cannot get better.
This is the final stage of chronic kidney disease (CKD). A kidney transplant is currently the best treatment for almost all children with ERF.
A healthy kidney is removed from one person (a donor) and placed in the body of another person who needs it (a recipient).
Transplanted kidneys come either from a living person donating one of their kidneys, or from people who have recently died.
This second type of donor is called a deceased donor and this topic deals with the particular issues relating to deceased donor transplants.
We recommend you read Kidney transplants – an introduction first. For further information about living donor kidney transplants, read Kidney transplant – living donors.
If your child needs a kidney transplant, he or she can be added to the national transplant list, which is also called the waiting list. Your child will then wait for a suitable kidney from a deceased donor, someone who has recently died. Although children are prioritised on the waiting list, it can take up to one year and sometimes longer before a suitable donor is found and the kidney transplant takes place.
This topic gives you information about deceased donor transplants. This topic covers:
- what information you may be told about the donor
- how kidneys are allocated (given) to children on the national waiting list
- about being on the waiting list while waiting for a possible kidney transplant from a living donor
- what happens when a kidney becomes available for your child
- specific risks associated with receiving a deceased donor kidney transplant.
We recognise that this may be a time of a lot of uncertainty and stress. Your child’s transplant team, a group of healthcare professionals who specialise in children’s kidney care and transplantations, will support your child and family throughout the entire process.
About this information
These topics are to help you understand the whole process of receiving a deceased donor kidney transplant well before the time it happens. You will have time to think about the details and risks of the operation, and lots of opportunities to discuss it with your child’s transplant team.
This information covers children and young people aged under 18 who are treated in a paediatric renal unit – a special unit for babies, children and young people with kidney problems.
Preparing for a kidney transplant from the transplant list
While doctors usually try to share information as openly as possible, kidney transplantation is an unusual situation in which two people are involved – a donor (the individual giving the kidney) and a recipient (the individual receiving the kidney – your child). It may not be possible to tell you much about the donor because it is important to respect the privacy of the donor and his or her family. Your child’s transplant surgeon (the surgeon who manages the operation) and paediatric nephrologist (doctor who treats babies, children and young people with kidney problems) will usually make the decision about the most suitable donor for your child’s kidney transplant.
The different types of kidney transplant have different risks. You will be able to speak with your child’s transplant team about the type of transplant you are not willing to accept. Some requests may change the amount of time your child will need to wait before a transplant.
Consent
As a parent or main carer of your child, you will need to give consent (agreement) before he or she goes on the transplant list. You will be asked to read and sign a form that confirms you understand all of the complications and risks, and agree to your child going on the transplant list.
You may also be able to sign a consent form for the kidney transplant itself. However, you will need to confirm your consent when your child is admitted to the hospital for the operation.
If your child is an older child or a young person, he or she will be encouraged to learn more about the transplant and provide consent for himself or herself.
This consent is not simply about your signature on a piece of paper. Rather, it is a process of understanding more about the operation and what is best for your child. This topic, together with the two topics on Kidney transplants – an introduction and Kidney transplants – living donors, can help you in this process.